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COVID patient with down syndrome: “Thank you God; You saved the day”

IU Health Methodist Hospital

COVID patient with down syndrome: “Thank you God; You saved the day”

She was alone and an hour away from the most trusted people in her life – her parents. She also had special needs and it was the staff at IU Health Methodist Hospital that helped bridge the gap between Jessica Rivera and her family.

By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org

There was a photo of Jessica Rivera posing with country music artist Tracy Byrd. There was a playlist of her favorite 80s and 90s country music, and her beloved musical show tunes. Those were some of the things that helped the caregivers at IU Health Methodist Hospital connect with a woman hospitalized with COVID-19.

At the age of 33, Jessica Rivera’s life has been spent in the care of her parents Jaime and Beverly Rivera. She is the eldest of four girls. Born with Down syndrome, Rivera has spent her life in special education classes, and received a certificate of graduation from Greensburg High School. She’s never been separated from her family.

But in March she was rushed by LifeLine ambulance to Methodist from a local hospital. She had COVID-19. Both her mother and father also had the virus. Their symptoms were less severe – cough, headaches, body aches, and low-grade fever. By the time Jessica got to Methodist Hospital she was already on a ventilator and was admitted to ICU.

“We knew she was sick and uncomfortable. She talked about a headache and body aches but she didn’t seem to have any breathing problems. Then suddenly one day she was unresponsive and barely breathing,” said her mom. “With a lot of people with Down syndrome, they can also have poor muscle tone which can impact their organ tone so we don’t know if that heightened her symptoms or not,” she added. Over time, they were told that the virus did not harm Jessica’s organs.

But still the illness took its toll. And with visitor restrictions, Jessica’s parents put their trust in their Christian faith and the staff at Methodist Hospital. It was a team that included Dr. Tyson Neumann, Dr. Eric Shepard, Dr. Farzad Loghmani, Dr. Caleb Larson, Dr. Jared Meeker, Dr. Fnu Sanna, Dr. Jane Turner, nurse practitioner Heather Martin, and chaplain Paul Goodenough. Other palliative care team members were also advocates for Jessica and people from around the globe were praying for her.

“When Jessica had been hospitalized for a week Heather Martin and other members of the palliative care team got involved. Those were tough conversations we had with them preparing us that she might not make it and asking us about our wishes. We knew they were caring for her from a distance,” said Beverly Rivera. At one point, Goodenough set up a Face time call on a Friday. He told the family in advance that Jessica was on a ventilator and non-responsive.

“He was so gentle as he prepared us for the call. It was precious and heartbreaking at the same time. They included us in everything they did every day,” said Rivera.

“On the one hand, Jessica’s situation scared me intensely - perhaps because I am much closer to her in age than most other COVID patients,” said Goodenough. “On the other hand, Jessica’s - and her whole family’s - strengths shined through and reminded me of the power of love. I’m not sure how her parents felt on the inside, but when they spoke to her by phone they sounded reassuring and encouraging, like a steady ship in the midst of stormy seas.”

The day after that heart breaking phone call, a nurse called the Riveras and told them Jessica was awake and alert. What followed next was something the Rivera’s treasure as a high point in Jessica’s recovery. Dr. Neumann was the one who determined Jessica was well enough to breathe on her own and removed the breathing tube.

“We weren’t expecting it until the next day and he was there and did it. Those few moments when the medical staff got to do something meaningful and successful were big moments,” said Beverly Rivera.

“Through the daily phone call updates we got to meet some of the most wonderful people at Methodist Hospital. They were the hands of our Lord taking care of Jessica,” said Jaime Rivera. “We ended every conversation thanking them for what they were doing for Jessica and other patients. They were part of our daily prayers for God to give them the strength and knowledge to take care of Jessica and all of the patients under their care. In our Christian faith, we believe in our hearts that Jessica is a miracle and Methodist Hospital is a big part of that miracle. We were able to see heroes in action, saving our daughter’s life.”

The battle against COVID-19 wasn’t over yet for Jessica as she transitioned to progressive care.

“Dr. Jane Turner is one of the most precious people I’ve ever met. The medical team continued to be so wonderful in keeping us informed but Jessica took a turn for the worse. It was almost as if she became aware of what was happening and she began to decline,” said her mother. Her parents had given her a phone to listen to her favorite music and she began calling her sisters and parents late at night in tears. She didn’t understand why they couldn’t be with her. She wouldn’t eat and she wouldn’t communicate with the staff.

Her family rallied around her. Jessica’s sister Samantha Mayer was a nurse at Riley Hospital working with COVID patients at the time. Her other sister Sabrina Rivera is a special education teacher, and Natalie Rivera was a recent graduate of IU, majoring in biology and chemistry. They tapped into all of their resources to help support their older sister. The family worked with an advocate for persons with disabilities and they presented a case that paved the way for other patients like Jessica. She needed the emotional support of her family to help her navigate this unfamiliar and scary turf. The medical team agreed, and Beverly Rivera moved into her daughter’s room where she remained isolated during the rest of her daughter’s hospital stay.

“Even with the best care, this was a very different case of COVID. At Jessica’s last educational assessment she presented as a 7-year-old and she was in an adult hospital, trying to figure out why her parents were not with her. It just made sense that we became part of her care team,” said Beverly Rivera.

It didn’t take long until Jessica rebounded. She was discharged on April 23 and began rehabilitation. Her favorite music continues to motivate her during physical therapy and helps her continue working toward renewed health. She is re-establishing her balance that may be attributed to a drop nerve injury in her left foot, and she continues to take oxygen at night. Otherwise, her mom says she is back to her happy self. “Just today she said, ‘I love my life, I love my family, I love my room, I love my home.’ Wouldn’t it be great if everyone were so content,” said Beverly Rivera. “Sometimes she also says, ‘we need to pray – Thank you God, you saved the day.”

As a “thank you” to her caregivers, the Rivera’s – who own a screen-printing company – recently distributed 300 blue t-shirts with red lettering. Written in Jessica’s handwriting were the words: “Thank you God, you saved the day.” There was another message too: “We fight COVID together. We are grateful to healthcare heroes.

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